Little Victories - a Column by Matthew Lafleur

A race has ended, and this time, I lost. I want to be honest, even though honesty feels especially heavy right now. I’d hoped to win this race. I really did. I’m deeply disappointed — not the explosive kind that demands attention, but the kind that settles in like fog,…

My high school emo self would feel deeply recognized in this column. I’ve always resonated with the eeriness of the 2001 film “Donnie Darko”; it’s a darkness that isn’t loud or theatrical, but rather solemn and quiet. It’s the kind that settles into your thoughts and asks questions without offering…

One of my favorite podcasts had an episode titled “Quantum Refuge,” which made me think about Schrödinger’s cat. I was never a physicist, but here’s how I understand it: Schrödinger imagined a cat sealed in a box with a tiny radioactive atom. If the atom decays, poison is…

If there were Olympic medals for complaining, I’d have an impressive trophy room by now. For most of my life with Friedreich’s ataxia (FA), I didn’t realize I was “training” for that, because complaining had become second nature to me. I didn’t always do it loudly; it was often…

I didn’t expect a Frankenstein movie to move me, yet here we are. When I saw Guillermo del Toro’s “Frankenstein” on my birthday, I anticipated tension and a few unsettling moments in the retelling of Mary Shelley’s familiar story with modern effects. Instead, I was met with something…

Surprises fuel me in life with Friedreich’s ataxia (FA). I normally don’t celebrate my birthday for more than a day, so I didn’t expect a party in September, especially considering that my birthday isn’t until mid-November. I’m turning the big 4-0 this year, but I’d planned to have a…

I intended to publish a column in August that brimmed with hope and included a passage by my friend and fellow columnist Elizabeth Hamilton. We wrote about vatiquinone, which was up for approval with the U.S. Food and Drug Administration (FDA). It had the potential to become the…

“This might be even better than a Kubrick,” I thought as “The Shawshank Redemption” appeared on my screen. I was FaceTiming with my manager, Ethan, and his son, who live in upstate New York — 1,461 miles from my South Louisiana home — and we were streaming the film…

My hair is finally the way I like it. In the world of Friedreich’s ataxia (FA), I celebrate every little victory that comes my way. I grinned — cheesily, vainly — as I rubbed an almond-sized glob of men’s hair gel between my fingertips and worked it into the…

There’s a distinct stillness in waiting — a breath held between hope and reality. As I’m writing this, my May 13 appointment is approaching, and I find myself suspended in this limbo, where the future teeters between two possibilities.​ Living with Friedreich’s ataxia (FA), where progression often feels…